In general, there is an issue around the quality of information about lupus on the internet. Rumours, unchecked data, and unconfirmed research all contribute to confusion and anxiety, and can lead to people taking the wrong actions for themselves and their disease. There is therefore a need for access to quality information about lupus.
Therapeutic patient education (TPE) is a key way to help people self-manage chronic conditions such as lupus. An essential component of TPE is access to valid information – but this is often available only in English, which is not the native tongue for most people in Europe. Data suggest that the overall number of EU citizens who can speak English is just 44%, and even those who are fluent may not understand medical terminology or disease information.
The www.Lupus100.org website aims to change this by providing disease information and education about lupus to people in their native language. The international launch of the multi-lingual website will coincide with World Lupus Day on 10th May 2023. It is hoped that this project will soon provide access to quality information about lupus to 95% of European patients in their own language, eliminating a crucial barrier to education, and helping to support management decisions.
In an abstract presented at the 2023 EULAR congress, the authors outline how the project came about – from the first endorsement by experts, to the French book that was used as a starting point for the core content. Patients from the Lupus Europe Patient Advisory Network (PAN) and ERN-ReCONNET doctors worked together to create the English version of the website, which was then updated and adapted for international use. This master version was put online as a starting point for an ambitious multi-lingual translation project. The English version of the site was launched in October 2022. So far, 18 translations are in progress, 10 of which are already available online. Importantly, a process has been established to collect comments and suggestions so that content can be maintained and upgraded on a continuous basis across all language versions. The authors hope that this effective collaboration will guarantee the quality of information on offer, and will represent a resource that can answer patient concerns, improve self-management and disease outcomes, and facilitate patient–doctor communication.
Source:
Karakikla-Mitsakou Z, et al. Lupus100.org – a step change in access to quality information for European lupus patients. Presented at EULAR 2023; Abstract #OP0004.
About EULAR
EULAR is the European umbrella organisation representing scientific societies, health professional associations and organisations for people with rheumatic and musculoskeletal diseases (RMDs). EULAR aims to reduce the impact of RMDs on individuals and society, as well as improve RMD treatments, prevention, and rehabilitation. To this end, EULAR fosters excellence in rheumatology education and research, promotes the translation of research advances into daily care, and advocates for the recognition of the needs of those living with RMDs by EU institutions.
